.... Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:Recently my wife attended a seminar that included a discussion of waivered services. The bottom line -- the DD waivered services program is out of money and is well into yet another crisis of care. I'll run through some history and summarize the current story.
- TEFRA: medical assistance, but qualification based on disability ... TEFRA will help pay for PCA Services and Waivered services.
- PCA services (see esp MN PCA Choice Option)....
- Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below)...
Developmental disability (DD or MR/RC (mental retardation) waiver) waivers began in 1981, as part of an effort to move persons with mental retardation/DD out of CF-MR facilities (institutional care facitlity for mental retardation). Families and guardians received the money equivalent to the cost of institutional care, and the threshold for funding was set at the level of disability requiring institutionalization in 1981.
Now there are waivers for DD, CADI (people <65 style="font-style: italic;">hey pay more in fees than they get in funds.
The funds do not increase once the client is out of school at age 21.
Essentially the program has been on a downward spiral since 1981, but it gets worse. The DD waiver program used for persons with autism and mental retardation is not getting any more waivers? [I need to clarify if is a funding freeze or a reduction.]
The waiting list is long for what waivers exist, and you move up it depending on the intensity of your need. It will be a long long time before anyone without a crisis of care gets one of these waivers -- when pressed, the speaker thought you could wait 5-10 years or longer. One consequence is adults with DD no longer have funds available to move out of their parents home. Eventually the parents are too aged to care for the children ...
So in 1981 persons with DD were institutionalized. Then the institutions were closed, but the funds went to the community. Now the funds are going away, but there are no more institutions.
The CADI (nursing home level disability) waiver still available. It requires full disability requiring nursing home level care. These have primarily been used physically disabled people and persons with schizophrenia or other severe mental health disorders. In some areas they are being used for the DD population.
In addition to the above we learned of the following MN programs:
- community support grant: up to $11K or so per year, have to have MA, can't use for PCA but does provide flexibility
- family support grant: $250 per month, income limit about $85K
- 2009 may bring a new program -- 1915J. I found this blurb: "The 2007 Minnesota Legislature authorized the Department of Human Services (DHS) to pursue approval of a state plan amendment for implementing a self-directed supports option in Minnesota. The amendment, referred to as the 1915(j), would allow Medical Assistance (MA) beneficiaries to be in charge of their own personal care services (PCA), instead of having those services delivered by an agency."